Publications

Our publications address significant issues in child health and well-being, such as the changing demographics of California’s child population. Many of our reports and briefs document the need for change in California’s system of care for children with special health care needs. We also produce publications highlighting the achievements in child health of Lucile Packard Children's Hospital Stanford and the child health programs at Stanford University School of Medicine.

In May 2017, the National Health Law Program brought together stakeholders from around California to discuss potential legal interventions to improve access to mental health services for children with special health care needs. This fact sheet summarizes their recommendations for action.

Evidence shows that to create a high-quality health care system, the family perspective must be actively pursued and incorporated at all levels -- direct care, organizational design and governance, and policymaking. A new fact sheet outlines the value of family engagement and the barriers that prevent its implementation, along with recommendations for improvement.

A study from the National Health Law Program (NHeLP) offers short- medium- and long-term recommendations on how to improve access to mental health services for children with special health care needs (CSHCN) in California.

In 2014, a national group of experts released a core set of standards for improving systems of care for children and youth with special health care needs. A newly updated version streamlines, simplifies, and updates those standards to encourage readability and ease of use.

A new report from Public Counsel documents the persistence of a longstanding issue in California—disparities in purchase of services for ethnic and racial groups served by the state's 21 Regional Centers.

Children with special health care needs (CSHCN) fare better when they are cared for in a "medical home," yet only a small percentage receive such care. In a series of focus groups and interviews, California pediatricians and other key informants discuss their views on caring for CSHCN, and their ideas about how system changes could enhance their willingness to provide a medical home.

Although children with special health care needs (CSHCN) fare better when they are cared for in a "medical home," only a small percentage receive such care. A survey queried California board-certified pediatricians about their experience in caring for CSHCN and their thoughts on system changes that could enhance their willingness to provide a medical home.

In 2014 and 2015, the Association of Maternal and Child Health Programs conducted a survey about family engagement policies and practices in federally funded Title V maternal and child health programs and programs for children and youth with special health care needs. The findings provide a snapshot of strategies to support meaningful family engagement, effective and innovative practices, and areas of need for improvement and technical assistance.

On December 7-8, 2015, the Lucile Packard Foundation for Children's Health organized a national symposium in Washington, D.C., to discuss issues within the general child health care system that have particular salience for the care of children with complex health problems.